"If someone else wasn't doing it, I would be that someone"

An American beauty queen with a rare genetic disorder is using her position to raise awareness of her condition.

23-year-old Victoria Graham was diagnosed with Ehlers-Danlos Syndrome (EDS) ten years ago and has had to have 10 operations since 2014 alone.

EDS is the name for a group of rare inherited conditions that affect connective tissue and can weaken blood vessels, make the skin extremely elastic and cause the joints to become hypermobile.

It’s hard to diagnose and for years doctors weren’t sure what the problem was.

Graham hasn’t let EDS hold her back though and is now a successful beauty queen who speaks openly about her condition.

But that wasn’t always the way - she hid her condition until she left school at 19: “I would rather have my legs dislocate than someone see me in a knee brace,” Graham told the BBC.

Now, she has to take 20-25 tablets every two hours and has a 25 inch scar down her back as a result of her surgery. But Graham has now realised that being open about her EDS makes her feel empowered.

Having always wanted to enter a beauty pageant, she decided to compete to become Miss Frostburg 2017.

And to raise awareness about EDS, Graham gave a monologue about the condition as part of her performance.

“When I'm on stage, I'm not the handicapped girl. I'm not the disabled girl. I'm not the sick girl,” Graham said. “It's almost like I'm free.”

And she won the title.

Graham is now using her fame to raise awareness - she visits children in hospitals, has started a support group for people with EDS and tells her story wherever she can.

 

6 hours ago I got a call from the producers in New York at @abcworldnewstonight to ask if they could feature me on their show. To be chosen as "America Strong" leaves me without words - I am honored beyond belief. The efforts I make are for the children I visit and people I connect with across the world who suffer from invisible illnesses and obstacles of all forms. To be their advocate, their voice, and a glimmer of hope is one of the most prestigious opportunities I have ever had. THANK YOU for this opportunity! I will make every effort to continue to make all of you proud 💪🏼❤️🌎🇺🇸 This is the best birthday EVER!!! #WorldNews #AmericaStrong #VictoriaGraham #MissFrostburg #ABCWorldNews #DavidMuir #EhlersDanlosSyndrome #TheZebraNetwork #ChiariMalformation #Spoonie #InvisibleIllness #ChronicIllness #RareDisease #ButYouDontLookSick #MakingInvisibleIllnessesVisible #MissMaryland #MissAmerica #MAO #MissAmericaServes #LiveYourPlatform #EarnYourCrown #ServeYourCrown

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“I was seeing people who were struggling - doctors were often recommended through word of mouth,” she explained.

“I saw a dire need for a network of sufferers and for someone to dedicate their life to that.

“I know I'm young and it’s a bold decision to make without a college degree - but if someone else wasn't doing it, I would be that someone.”

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